A Whangārei whānau are stuck without adequate support for their adult disabled daughter to participate in the community and reach her full potential.
Due to a lack of funding, Sarah, whose name has been changed to protect her family’s privacy, can’t join her friends for activities and outings she would normally enjoy through a local day programme.
She can attend for only half a day, then returns home to no activities or stimulation.
She is now 30 years old, and government agencies continue to use an assessment carried out when she was in primary school to determine the funding she will require until the age of 65.
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The Ongoing Resourcing Scheme (ORS) assessment that Sarah underwent in primary school determined how much support she needed to be included at school and participate in mainstream education.
The assessment, was undertaken by the school and Ministry of Education specialists, and categorised her as requiring a “High Needs” level of funding at school.
At the time, her parents were not involved in the assessment and didn’t know the assessment would subsequently determine her level of community participation funding from the Ministry of Social Development for such a long time.
As a result of being assessed as “High Needs” rather than the “Very High Needs” (VHN) category, as an adult, Sarah is allocated funding to provide only 13 hours a week for managing her personal cares from a support worker.
Her parents have made the decision to manage Sarah’s personal care, so the funding can instead be used for a support worker to attend a local community programme with her.
Despite that, Sarah only has enough funding for a support worker to attend the programme with her for half a day.
“She misses out on all the community activities. This is what we have been stuck with,” Sarah’s father, *Kevin, said.
“We want her to go, so she can learn and be stimulated there.”
Sarah lives at home with her parents and is an only child.
“We love her to pieces,” Kevin said.
He said they’ve fought hard for all the support she can get, but the funding guidelines are just not flexible enough.
This issue was recently raised by Chief Ombudsman Peter Boshier regarding a young disabled man in a similar situation.
As a result of the Ombudsman investigation, MSD apologised to the family and provided a flexible payment.
Since the Ombudsman’s findings, MSD’s Julia Bergman, general manager of disability, seniors and international, said the agency was working on alternative options for reassessing eligibility for Community Participation Services funding.
It was also in the early stages of a broader review of vocational supports for disabled people.
“This is an important piece of work that we want to get right,” she said.
However, MSD has not had any formal discussions with the Ministry of Education (MoE) about an alternative system since the Ombudsman case note was published.
Minister of Social Development Carmel Sepuloni was briefed on the Ombudsman case note in March.
Sean Teddy, hautū (leader) of operations and integration at MoE, was also aware of the Ombudsman’s investigation and MSD’s review of its vocational support.
“The ORS package provided by the Ministry of Education is for ākonga [students] with the most complex needs to support their participation and learning alongside peers in their education setting for the duration of their schooling, up until they are 21 years of age,” Teddy said.
However, there was no national process to inform schools and families that the ORS assessment determines funding for Community Participation Services.
“This process has been in place for more than 20 years,” he said.
Teddy said it was up to Community Participation Services and its providers to work with schools and whānau to develop appropriate transition planning and support for transition from schooling to wider community activities.
MoE is completing a review of the support for ākonga with the highest needs and recommendations would be presented to Education Minister Chris Hipkins later this year.
In the meantime, Kevin has tried to get Sarah reassessed from high needs to very high needs through their disability services provider, NorthAble, but was unsuccessful.
Adam Dade, chief operations officer at NorthAble, said this designation was reviewed at school and it was difficult to get a reassessment as the child grows into adulthood.
“When rangatahi leave school, they can no longer have an ORS assessment and, as such, the designation they have follows them for life,” he said. “This can mean that they are not eligible for VHN funding if not assessed when in education.”
While attempts for Sarah to get reassessed failed, Kevin asked about discretionary funding to cover the cost of her attending a day programme full-time.
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However, Dade said the purpose of the discretionary funding wasn’t to provide an ongoing funding top-up that went above and beyond someone’s eligibility under the current assessment process.
”NorthAble’s discretionary funds sits within Whaikaha Ministry funding allocation,” Dade said. “We have no access to discretionary funding when it comes to MSD for community participation … There is little that can be done to increase a funding eligibility under MSD.”
Dade said if someone were unhappy with their allocation of funding under NASC, they could get a peer review to ensure funding is in line with the contract requirement’s appropriate allocation.
He also said there was a range of flexible support options, such as Individualised Funding, and NorthAble readily supported those who were willing and able to manage their funding in that way to engage within it.
Regarding the Ombudsman case note, Dade said NorthAble hadn’t dealt with many similar cases, but the organisation tried to enable as many disabled people as possible to attend its day services independently, using mainstream supports when needed.
Dade said NorthAble would support a process to review access to VHN funding, and had provided feedback when requested on this.
However, at present, the organisation could only deliver services within the scope of the contracts.
Kevin said another needs assessment review or evaluation should be required when a disabled person leaves school.
“That’s a different part of life,” said Kevin. “Trying to live on your own and away from parents.”
Colleen Brown, chair of Disability Connect, said the lack of mechanism for an MSD assessment for community participation funding had “long-term consequences”.
“People who are disabled do not stay the same, none of us stay the same from when we were 16,” she said.
She said the discrepancy between the two levels of funding creates two groups of disabled people – a group of haves and a group of have-nots within the disability community.
Her idea for a resolution was that the disabled young person would be reviewed more regularly, and given the opportunity to talk about their expectations for the future – what they want to do in life and where they want to go.
Early intervention specialist Frian Wadia has three children with disabilities and said the ORS system was “fundamentally flawed”.
“The application expects you to put in information about the child as of right now without anticipating any of the changes and additional fluctuating factors that will impact the child when they move from school because it’s a different environment,” she said.
“It’s ridiculous to expect that the child is going to be able to function at the same level and their needs will remain the same.”
If there was going to be a change in the funding model and the manner in which funding is made available, it should “allow families to dream big and allow the disabled person to dream big”.
In the meantime, Kevin has made a complaint to the Ombudsman regarding their level of support funding.
For Sarah and her whānau, they want to see her with adequate support around her to be independent.
“Being in the community if possible – supported independent living is what we’d like her to have," said Kevin. “She’s a social girl, she’s got friends from school and in the day programme … She loves being with them.”
* Names have been changed to protect the family’s privacy
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